Thursday, October 30, 2008

Fun with pumpkins

Finally ... the day before Halloween ... we carved our pumpkins. Kyle and the kids gutted them and I designed ... okay, I carved ... them. Mason wanted Batman, of course, and we decided to give Chicky a Hello Kitty pumpkin ... from scratch! Gosh I'm good!

The kids gutting Mason's pumpkin ...
Ta da ... the final projects ... didn't I do a good job?! LOL
The kids with their silly "baby" pumpkins ...
Stay tuned, because tomorrow Batman and Batgirl will make their debut!

Wednesday, October 29, 2008

Where has the time gone?

So much for blogging every day in October! We have been very busy here ... work, school, life, business, adoption ... the list is never ending.

Mason is having some troubles in school with behavior, so we are working on that. When it comes to sitting and working on projects, he does great. He thrives off of structure. However ... the minute he senses that a less organized activity is coming {i.e. circle time, bathroom break, playground}, he gets a bit too worked up. He likes to "play Power Rangers" with his friends, however he is a bit too rough. Not to the point that anyone gets hurt or that the other boys even care, but the activity in general in disruptive. Any ideas on how to curb this?

Another issue he is having is that he seems to think bathroom breaks are hysterical. Sigh. The five boys in the class have to stand in line while they each use the bathroom ... and Mason thinks it is funny that they are "naked". Seriously? WTF. I see none of this behavior here at home ... we don't focus on being naked ... there are no issues. So yeah ... any ideas on how to curb this?

Payton is doing great in school ... better at the special needs school than at the Mom's Morning Out program. Her biggest setback at this point continues to be her speech, however I can see how her language is expanding every day. She only has a couple words that she says clearly ... "no" being the main one. LOL. She also says dog, ball, more, milk ... umm, what else. I have to think. She has several signs, but needs more ... eat, sleep, drink, truck/car, potty, ball, more, wash, dog ... I have to think of the others, I know there are more.

I'm at peace with her speech delay ... I have come to the point where I know that she will talk when she wants to talk. She has shown us all along that she will do things at her own pace. For now, we can communicate with her just fine.

She is doing great on the potty ... she wears pull ups now during the day and will stay dry if we make sure we take her to the potty consistently. She is still training and while she sometimes will tell us she has to go by patting her diaper, we have to remember to prompt her to go most times. Her special needs school has been great with working on potty training with her ... she stays dry there. The MMO program ... not so much. They claim she hasn't used the potty for them at all yet, and that just makes me wonder how much they are really helping the cause here. If they are waiting for her to say, "I have to go potty." ... well, they have another thing coming. LOL. She can't talk people.

I have a fear that she is getting left behind at the MMO program, but I'm not sure. She is now going into her classroom with no problems or tears, so that is definitely a good thing. She likes it there, but I just want her to be included. I was told that she isn't participating in circle time and that they don't make her, or any of the other kids, for that matter, if they don't want to. IMHO they should be making the kids participate and teaching them what it means to have circle time. I know she can do it ... she always did it at Chesterbrook and she does it at her other school. But they are letting her get away with not participating. I just hope she isn't getting left behind, so to speak, because she can't talk like her peers. I think we need to have a conference. LOL. We'll see how that goes ... overall I'm happy she is there, although that may not have come across here ... oops.

Thursday, October 16, 2008

Raising Awareness {Buddy Walk style}

As you may have heard, this month is Down syndrome awareness month. In honor of that, approximately 270 cities across the nation host a Buddy Walk, a huge advocacy event for individuals with Down syndrome.

Our local Buddy Walk is this coming Saturday. We are participating in the walk, although we have not done much fund raising since we have been working so hard to fund raise for our adoption of Ms. Addison.

This will be our last year as Payton's Posse ... next year we need to incorporate Addison into our team name. Any suggestions? My favorite so far is The Balsis Brigade ... thanks Shay! :)

If you care to check out our team page or if you would like more information about the walk, click here. We'd love to have you join us if you are able ... there is lots of fun stuff for the kids!

Wednesday, October 15, 2008

A special family ...

One of the most amazing things that has come from having a child with Down syndrome is the friendships that I have made. Meeting other families that are similar to ours that are on our journey ... it is really hard for me to put into words just how special of a bond we have with them. It is instantaneous. It is different than a regular old friendship ... we get each other. We are experiencing the exact same things in life. We understand what the other is going through. When can talk to each other about PT, OT, ST, AAI, EI, IFSP, DS, IEP {and the list goes on} and know exactly what all those things mean and why each one of them have such a huge impact on our lives.

One of those friends that I have made is McKenna. Even though we live half way across the country from each other, we talk on the phone every day and we have been lucky enough to meet up a few times. I think she is my long lost twin ... it is pretty scary actually. She is amazing ... equally amazing is her little girl, Darah, who happens to have a little something extra in the chromosome department.

Not only are McKenna and I on the Down syndrome journey together, we are on the road to adoption together. McKenna and her husband are adopting a little girl from Eastern Europe ... everyone, please meet Reese ... isn't she sweet?


Tell me about yourself and your family.
DJ and I have been married for 5 1/2 years and have two children. Connor is almost 2 and Darah just turned 4. Darah has Down syndrome. We are pursuing the adoption of a 9 month old little girl who also has Down syndrome and a cleft lip and cleft palate.

Tell me why you decided to adopt a child with special needs?
Having Darah has opened our eyes up to a world we didn't know much about. Having a child with special needs brings so much reward and joy to our lives. We also know that around the world, so many children are abandoned because they have special needs. We feel that adopting a child with special needs will not only enrich our family, but save a precious child in the process.

What special needs does she have?
Reese has Down syndrome. She also was born with a cleft lip and cleft palate. In Reese's country, she is not eligible for the very simple procedure to repair her cleft lip and cleft palate. While it may look shocking, she will have surgery to repair her cleft lip and palate when she comes home. She will be in the hospital probably only overnight for the lip repair and probably only two nights for the palate repair. She is able to eat right now with a special bottle and we are very encouraged at how chunky she is because that tells us her caregivers are taking the time to make sure she is nourished! Neither Down syndrome or cleft lip/palate are a scary thing! While Reese will have to have surgery and will probably have delayed development and some extra developmental therapy a lot of children do not need, we know that our every day lives will not be that much different than anyone else's. We can't wait for her to come home to our family!

What would be your advice to anyone wanting to adopt?
The main thing I want to tell people is that we are not special people. We are making a big decision to adopt a child, but we're not any different than any other family. We were afraid of the adoption process and the fundraising and now that we are in the process I'm learning it's not as big and scary as I thought it would be. If you are wanting to adopt, I encourage you to spend a lot of time in prayer. I also encourage you to find some people who have been through the process and start asking all your questions! That was the best thing I did before we committed to Reese. I also encourage you to consider adopting a child with special needs. These children are at the biggest risk of being sent to institutions around the world. 80% of them die within the first year of being transferred to an institution. A lot of countries are not accepting of individuals with special needs and it is important to send the message to these countries that these children ARE WANTED and ARE LOVABLE and more important to save these children from dying in awful institutions! Find someone who has a child with special needs and spend some time with them. I truly believe that every family should know the joy of raising a child with special needs. Having a daughter with Down syndrome has enriched our little family in so many ways and made us all better people! I am an open book with our adoption process and happy to share anything about our journey with anyone!

If you would like to follow their journey to Reese, click here to be redirected to their blog. If you would like to help them in their fund raising efforts with a tax deductible donation, click here. I'd like to leave you with The Starfish Story, a favorite of this family ...

The Starfish Story
Original Story by: Loren Eisley

One day a man was walking along the beach when he noticed
a boy picking something up and gently throwing it into the ocean.

Approaching the boy, he asked, “What are you doing?”

The youth replied, “Throwing starfish back into the ocean.
The surf is up and the tide is going out. If I don’t throw them back, they’ll die.

”Son,” the man said, “don’t you realize there are miles and miles of beach and hundreds of starfish? You can’t make a difference!”

After listening politely, the boy bent down, picked up another starfish,
and threw it back into the surf. Then, smiling at the man, he said…”
I made a difference for that one."

Sneaky little kid

Mason: (comes into my room from his room, where he should be sleeping) Mommy, can I sleep in your room? I'll be good like I was last night.

Me: No, I want you to sleep in your own bed.

Mason: Please? I promise I'll be good.

Me: I thought you were going to start sleeping in your own bed? You aren't getting a Batman room unless you sleep in your own bed every night.

Mason: I said I will sleep in my room after Baby Addison comes.

Now what am I supposed to say to that? He is such a good kid. I love that he constantly is getting ready for Addison to come home. I guess I'll be sharing my bed again tonight. Sigh.

Tuesday, October 14, 2008

Down syndrome {the facts}

  • Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
  • Down syndrome is the most commonly occurring chromosomal abnormality. One in every 800 to 1,000 babies is born with Down syndrome.
  • There are more than 350,000 people living with Down syndrome in the United States.
  • Down syndrome affects people of all ages, races and economic levels.
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 56 today.
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
  • Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
  • People with Down syndrome attend school, find work, participate in decisions that affect them, and contribute to society.
  • Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future

Sunday, October 12, 2008

Clifton Days {and a visit from Biscuit the dog}

Today we took the train to Clifton Days with Shay, Jeremy and Jaxson and Kristie and Casey. We all met at the train station and we almost missed the train {imagine that}. It was a fun, relaxing time for all of us.

Mason on the old caboose ...
Payton on the old caboose ...
Mason looking angry and his Batman towel we bought
{we are redoing his room and bathroom in Batman} ...
Chicky ...
My adorable nephew, Jaxson ...

Also along for the ride today was Biscuit ... he is the class {stuffed} dog at Mason's school and this weekend it was Mason's turn to be Biscuit's daddy. We had to let Biscuit experience things in life that he had never experienced ... I think we did pretty good!

Here is Mason and Biscuit {and Mommy} riding a train ...
Mason and Biscuit riding a horse ...Mason and Biscuit sitting in a firetruck ...

Some of our other adventures with Biscuit this weekend ...
Mason and Biscuit making cookies ...
Mason and Biscuit at t-ball ...
Mason and Biscuit reading a story before bed ...

Saturday, October 11, 2008

Christmas Cookies in October

One of my favorite things about Christmas is baking cookies throughout December. Every year, the girls in my immediate and extended family get together for an entire day of baking cookies. Things have become pretty competitive {my sister tries to show us up with her expert decorating ability of cut outs}, but we have so much fun and we laugh a lot.

One of my favorite cookies are spritz. I love them and I could eat them all day long. I've been craving them two months early this year, so the kids and I made a batch of them today. Instead of making Christmas shapes, we made cars and boats ... and we used red and pink sprinkles {which are each of the kids' favorite colors}. They are all gone now. In fact, I think they were all gone within 24 hours. Oops.

Mason and Payton dousing the cookies with sprinkles decorating the cookies ...

Tuesday, October 7, 2008

A conversation with Mason

This morning I told Mason he needed to get dressed before he could watch tv, so off to his room he went. I went in to check on him as he stood in front of his closet trying to figure out what to wear. I pulled a shirt out and said ...

Me: Here, how about this shirt.
Mason: No Mommy, I want to look cool!
Me: Dude, this shirt is cool.
Mason: No it isn't Mommy, it has flowers on it.
Me: They aren't flowers, it is a bandana print.
Mason: No, I want to look cool.

I digress. The kid is worse than a girl when it comes to clothes. So then we move on to a green Gap polo that has the number four on it ...

Me: Okay then, wear this shirt ... look, it has the number four on it. {In our house, the number four signifies Brett Favre.}
Mason: No, that was the Packers. {Inferring that Favre no longer plays for the Packers.}
Me: But dude, he is still number four with the Jets.
Mason: No Mommy!

So then Kyle intervenes and takes Mason to show him that his green Gap polo with the number four on it matches Kyle's green Jets Favre jersey with the number four on it. Mason still didn't budge. Sigh. The yellow shirt it is.

Monday, October 6, 2008

The Creed of Babies with Down Syndrome

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

Sunday, October 5, 2008

I'm still in love ...

... with Jordan Knight. LOL. For real. Just look at him. Sigh. {Yes, my husband is aware of my obsession.}

A few nights ago, I went to the New Kids on the Block concert with my sister and sister-in-law ... we had SO much fun! The concert was awesome and I got to stare at Jordan all night. Ahh. They sang a lot of their old songs and it brought back so many memories from back in the day. I was a die hard fan and I had so much memorabilia ... where did it all go, anyway? I even had posters of Jordan plastered all over the underside of my sister's bunk bed so I could stare at him when I was in bed. LOL.

So ... where do I get tickets for the next concert?

Saturday, October 4, 2008

The testing ...

{Continued from Where it all began ...}

We went for genetic counseling first. We still did not have our AFP test results back, but the general feeling we got from the genetic counselor was that we should do nothing. She showed us statistics and really had us thinking that all of this was nothing.

The next day, we got our AFP test results back ... NEGATIVE! We were SO excited ... that means nothing in my blood work indicated that my baby would have a chromosomal abnormality. {More on this later ... if only we knew then what we know now ... AFP tests are NOT reliable in "detecting" Down syndrome. Not that it would have made a difference for us, but still.}

A couple days later, we had our level II ultrasound with a specialist. We were told that the kidneys were not a concern, as dilation was common in utero. Then they studied our baby's nose ... they found it! They found the nasal bone! Your baby is fine. Have a good life!

What a relief! All of those tears and worries over the past week were for nothing.
In light of the results of the ultrasound, we declined the amnio, as we really felt there was no reason to jeopardize my pregnancy. Now we could enjoy the remainder of my pregnancy and have no worries, right?

To be continued ...

Friday, October 3, 2008

Show Respect

Remember the public service announcement (PSA) that Payton is in? The one promoting RESPECT for individual's with disabilities? Well, the National Down Syndrome Congress (NDSC) just put out their national newsletter featuring the PSA. Here is a scanned copy of it bearing my baby's picture!

Thursday, October 2, 2008

Where it all began ... Payton's birth story

In April 2005, I went through IVF in order to try to get pregnant with my second child. Success ... it worked the first time! We were ecstatic, as going through all those infertility treatments {i.e. shots, monitoring, egg retrieval, etc} is very stressful. I had some "old blood" spotting early in my pregnancy, but it was always written off as nothing. I never had that during my first pregnancy, so I was sort of worried since I didn't necessarily think it was normal.

Fast forward to my 20 week sonogram ... you know, the big sonogram where you find out the sex of your baby. "It's a girl! Congratulations! Everything looks great." Kyle and I left the appointment on cloud nine ... we were having a girl and we already had a boy ... what could be better?

That afternoon Mason was sick, so I had him at the pediatrician's office, which happens to be right across the hall from my OBGYN. My phone rang and I let it go to voicemail since we were in with the pediatrician. I listened to the message as soon as we were done. "Hi Bethany ... it is Dr. Smith. There were some concerns that were seen during your sonogram earlier today and I'd like to speak to you about them. Please call me." What? What concerns?! The radiologist told us everything looked great. How could there be concerns?

I decided to go straight into the office of my OBGYN and asked for Dr. Smith. Dr. Smith took me back to her office and explained that they had two concerns: 1) the baby's kidneys were dilated; and 2) they did not see a nasal bone. As soon as I heard that I lost it. No nasal bone? My baby is not going to have a nose? My OBGYN then told me that absence of the nasal bone could be indicative of a chromosomal abnormality. What?! No way, not me ... how could my child have a chromosomal abnormality? Things like that only happen to other people, not me! I was in hysterics ... and meanwhile Mason, my very busy little 20 month old, was running all over the place, tearing up the office. How ironic that life continued to go on in his mind, while it had come to a screeching halt in my mind ... and I was forced to deal with it.

I left my OBGYN's office confused and heartbroken. I went home and just started googling ... trying to find out what all this meant. Once I was able to catch my breath, I called my OBGYN back and got some answers to some of my questions.

Will my baby not have a nose? What does absence of the nasal bone mean?
I was told that the absence of a nasal bone does not necessarily mean what it says. My child would have a nose, it would just be more flat and not as pronounced as a typical person.

What is wrong with my baby's kidneys? Why are they dilated? What does this mean?
I was told that many babies have dilated kidneys in utero, and this often resolves itself by birth. My OBGYN could not really connect this issue to the lack of nasal bone, so that was even more confusing.

What do we do now?
Even after telling me these concerns, my OBGYN still told me it could be nothing. Maybe the ultrasound tech missed the nasal bone ... maybe it is really there. The kidney issue could be nothing and could resolve itself. Even if there is not a nasal bone, that does not necessarily mean the baby has a chromosomal abnormality ... even though it typically is indicative of just that.

We were referred for genetic counseling, where we would discuss having an amnio. We were also still waiting for my AFP test results and we scheduled a level II ultrasound with a specialist, where they could get a closer look at the nasal bone. It was a week from when I was given this news until we could get these things done ... all I did was cry. My heart was broken.

To be continued ...

Wednesday, October 1, 2008

October is Down syndrome awareness month!

Unringing the Bell is hosting the 2nd annual 31 for 21 blog challenge ... and I'm playing! Here are the rules ...

When do I do it?

The goal is to blog everyday for the month of October. 31 days to raise awareness of Down syndrome (a.k.a. Trisomy 21). Get it? 31 for 21!

What do I write about?
Anything your heart desires. I don't like to put restrictions on ya'll. I just like to read what you have to say. Last year people made up “challenges” and gave out ideas for topics. I thought that was a lot of fun! Pictures are good too!